Monday, May 19, 2008

Live Strong, Live Weak, Just Live

I visited the doctor last week, and the check-in area was laden with free stuff from the Lance Armstrong Foundation: bracelets, brochures, postcards. I do love free stuff.

As I wondered just how many yellow bracelets I could in good conscience take, my eyes drifted to the foundation’s “manifesto.” (The word “manifesto” makes me want to reach for a rock, but that’s another issue.) I read:

We believe in life. Your life. We believe in living every minute of it with every ounce of your being. And that you must not let cancer take control of it. We believe in energy: channeled and fierce. We believe in focus: getting smart and living strong. Unity is strength. Knowledge is power. Attitude is everything. This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed. We help you accept the tears. Acknowledge the rage. We believe in your right to live without pain. We believe in information. Not pity. And in straight, open talk about cancer. With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with. This is no time to pull punches. You’re in the fight of your life. ....

There is much to admire here -- and even more to admire in the foundation’s work.

But I found myself repulsed and saddened by the manifesto’s rhetoric. Some of it was the jabby marketing talk. The short sentences. The powerful verbs.

But what really got me is the pernicious limitations of “strength” as a model for living with and through cancer. Surviving this disease is not just a fight, and strength is not the only necessary commodity. As George Demetri, the Harvard sarcoma genius, pointed out somewhere: Lance Armstrong is a remarkable man, but he had perhaps the most chemosensitive type of tumor in existence. This is not to minimize what he went through, and what he accomplished afterward, it’s just to highlight his limitations as a model for the rest of us. And to be fair, Armstrong himself is quite well aware of this.

I want to live strong -- and, in fact, I wear the bracelet to remind myself that I am strong and that others are in solidarity with me, sharing their strength -- but I know that strength isn’t everything. Which is why Bill Stuntz’s thoughts on “living weakly” with stage-4 colon cancer touched me deeply when I read them yesterday. (Another thing that touched me that day of thinking of bracelets, and manifestos, and cyclists: My friend BY sent me a picture after completing his first 100-mile bike ride. He was wearing a bracelet for me. More bacon for you, my friend.)

Reduced life expectancy aside, the chief consequence of stage 4 cancers—even more, the chief consequence of their treatment—is weakness, not strength. Cancer and chemotherapy, taken together, are exhausting. Walking up a flight of stairs feels to me like running a couple of miles would feel to a typical out-of-shape 50-year-old, which is what I would be if I were healthy. All mental exercises are several times harder than they used to be...

In short, I can’t live strong, because there isn’t much strength left in me. But I can live weak.

What does that mean?

.... An interesting thing happens when you put aside all the yardsticks and just do what’s possible. Motivation changes. Work is no longer about achievement and reward. It’s more about love and beauty. There is something very powerful—C.S. Lewis might have called it deep magic—about working for love of the work itself: labor becomes less labored, more gift than obligation. I don’t know how much longer I’ll be able to put words on a computer screen—but the ability to do it now, even if only sometimes, is more precious than I can describe. I don’t know whether that makes the work better, but I’m pretty sure it makes me better.

Likewise, there is something inexpressibly lovely—notice that word’s first syllable—about ordinary tasks done for love of the tasks, and done while in the grip of a disease that seems determined to make those tasks impossible. It’s the beauty of a runner’s last marathon, the beauty of an aging athlete’s final game, the game he pours his soul into, as the best artists do in their best work. It may not be lovely to anyone else, and that’s OK by me: cancer is an ugly disease, in every possible way. No wonder people recoil from it. But in the midst of all its life-sapping, soul-destroying ugliness, something amazing can happen: the most ordinary things, the most mundane tasks, take on value and beauty beyond anything I could have imagined. Whether or not anyone else sees it, I see it. And that’s enough.

“Live strong” sounds to me like denial: I’m not strong, and pretending I am can’t change that fact. But I can live weak: do what I can, however small and ordinary, day by day. Some of the living—I wish it were more, but at the same time, I thank God for the “some”—is surprisingly good.

Yes.

Department of More Yes: Here's L., hoisted up from the comments to guest addendum blog:

I love this entry and Bill Stuntz's thoughts. I have long had ambivalent feelings about the "live strong" bracelet, which I wear in hope for you but mostly because of the intense and beautiful solidarity with which they were given to us by T., friend and colleague who passed them out at work for us to wear with knowledge that everyone there was behind us. And truly, what gives them meaning is to sit in a meeting and look around the room and catch a glimpse under a sleeve or right there on a bare wrist -- so many yellow bracelets. They are crazy sunshine (OK, winner's yellow jersey) yellow that doesn't match a thing anyone would wear, and yet there they are, a silent message of hope and caring. But everytime I think of the literal message that I'm wearing I feel my failure. It's a great idea, a Tour de France-winner kind of ideal that I wish I had some kind of kinship with, but maybe "live weak" is as fairly applied to the sufferers and the caregivers as long as we make the effort to see beauty and joy at least sometimes. I've asked myself, if you die, what will I do with this bracelet? Never take it off in remembrance, of both you and a life ethic I'd like to embrace? Have a symbolic and satisfying moment with scissors? Or tuck it in a drawer to come across along with all of the other things that will break my heart? I can't answer that yet. But to the people who wear these ugly rubber bracelets, no longer cool, every day because they love you -- us -- it does not escape my notice. The friends who stay through the long, bloody, tedious battle, this to me is grace and god.

Clearly L. deserves her own blog, but I'm happy to have her with me, here and everywhere.

1 comment:

I love this entry and Bill Stuntz's thoughts. I have long had ambivalent feelings about the "live strong" bracelet, which I wear in hope for you but mostly because of the intense and beautiful solidarity with which they were given to us by T., friend and colleague who passed them out at work for us to wear with knowledge that everyone there was behind us. And truly, what gives them meaning is to sit in a meeting and look around the room and catch a glimpse under a sleeve or right there on a bare wrist -- so many yellow bracelets. They are crazy sunshine (OK, winner's yellow jersey) yellow that doesn't match a thing anyone would wear, and yet there they are, a silent message of hope and caring. But everytime I think of the literal message that I'm wearing I feel my failure. It's a great idea, a Tour de France-winner kind of ideal that I wish I had some kind of kinship with, but maybe "live weak" is as fairly applied to the sufferers and the caregivers as long as we make the effort to see beauty and joy at least sometimes. I've asked myself, if you die, what will I do with this bracelet? Never take it off in remembrance, of both you and a life ethic I'd like to embrace? Have a symbolic and satisfying moment with scissors? Or tuck it in a drawer to come across along with all of the other things that will break my heart? I can't answer that yet. But to the people who wear these ugly rubber bracelets, no longer cool, every day because they love you -- us -- it does not escape my notice. The friends who stay through the long, bloody, tedious battle, this to me is grace and god.